Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria

Editor's comment: Celeste Cooper describes her concerns about the term “fibromyalgianess” in this excerpt from her letter to the American College of Rheumatology:

“I sit in angst because the healthcare industry, of which I have spent most of my adult life, is entertaining the demeaning label of “fibromyalgianess.” I ask, how are we ever to change the way pain is perceived, judged, and treated as set forth in the Institute of Medicine Report, “Relieving Pain in America” if such disingenuous labeling gains general acceptance? This term was coined by Dr. Frederick Wolfe et al. As I am very concerned regarding Dr. Wolfe’s capricious attitude in his published papers on fibromyalgia, I would like to to know if the ACR has formally adopted the Wolf 2010 criteria for diagnosing fibromyalgia.

“If we are to move to a biopsychosocial model of healthcare delivery, one cannot use labels that harm patients and their ability to cope. When we enter a physician’s office with hope and leave in tears, our needs are hijacked. Such neglect delays appropriate treatment and assessment of comorbid conditions.”

”FIBROMYALGIANESS” — Patient Harm: The Facts and the Effects of Fibromyalgia Diagnostic Criteria

Someone recently shared a comment made by her physician at Duke University that horrified me. I was appalled that a physician would make such a statement, so I want to share my reaction with you. It goes like this…

Duke University physician:

"You do know that fibromyalgia is just a word we useto talk about psychosomatic pain, don't you?"

Could it be she read “The American College of Rheumatology Preliminary Diagnostic Criteria for Fibromyalgia and Measurement of Symptom Severity”? (Wolfe, 2014). In a letter to follow this blog, I will be looking into whether or not the American College of Rheumatology has approved the 2010 criteria. It appears they consider comorbid conditions of migraine and IBS (here) that are not considered in the Wolfe criteria as follows:

“Of the binary variables, irritable bowel syndrome, abdominal pain, and headache had variable importance. However, they added no power to correct classification and we did not include them in the diagnostic criteria.” (Page 208, Wolfe, et al., 2010).

Could it be this Duke University physician is unaware of what others in the field have to say? See “ACR 2010 criteria for fibromyalgia critiqued” by Mary Ann Moon, Family Practice News Digital Network, here.

Could it be that she did not see Dr. Sean Mackey’s lecture at Stanford University that I believe supports key elements in the 2013 Alternative Diagnostic Criteria? You can view it here.

This attitude toward fibromyalgia must be stopped in its tracks if we are to maintain forward momentum. There is a great deal of empirical evidence showing FM is biological. Yet, despite repeated research that the brain of the FM patient does not respond to painful stimulus in a normal way, (not only the emotional center, but also the center in the brain that specifically interprets pain), many practitioners, even those from Duke University, are ignorant. The 2010 Preliminary Proposed Diagnostic Criteria, modified in 2011, set forth by Dr. Frederick Wolfe are endangering the many strides taken to understand fibromyalgia over the past 100+ years.

“[Fibromyalgia] has been known to exist for more than a hundred years. Symptoms of what we know today as FM were first described in the seventeen hundreds, and the disorder was first observed and documented by British surgeon William Balfour in 1816. In 1904 the same collection of symptoms was recognized by another British fibromyalgia pioneer, Sir William Gowers, who described chronic soft tissue syndromes as fibromyositis.” (Excerpt Integrative Therapies for Fibromyalgia, Chronic Fatigue Syndrome, and Myofascial Pain: The Mind-Body Connection.)

We also have the new Diagnostic and Statistical Manual of Mental Disorders (DSM-5) from the American Psychiatric Association's (APA) to thank for what Dr. Wolfe calls FIBROMYALGIANESS. Marly Silverman and I wrote about, and predicted, this two years ago, here.

I have been in collaboration with well-respected fibromyalgia expert Dr. Robert Bennett, and have written a blog explaining his well-researched diagnostic criteria, which DOES consider all aspects of fibromyalgia. He and his colleagues report their findings without bias. I hope you will read that blog here. Pay close attention to the example of the 2013 Alternate Fibromyalgia Criteria (2013 Alt FM Criteria) and the proven tools such as the Fibromyalgia Impact Questionnaire. Following is an excerpt from that blog with my comments.

1. “Fibromyalgia patients have a continuum of symptoms; a diagnosis based on a strict numerical cutoff is subject to error.” In other words, a physician or nurse practitioner should not be limited by a subjective questionnaire. They should rely on their abilities to physically assess a patient with hands-on exam to assess physical complaints, take a patient history, order and interpret test results, complete a physical exam, and apply their diagnostic skills. No practitioner should limit the scope of their abilities. Without these expert assessments, we would not know that the tender point count has not stringently met the 1990 ACR criteria.

2. “The presence of another pain disorder or related symptoms does not rule out a diagnosis of fibromyalgia.” We know from the literature that fibromyalgia can and often does coexist with certain other disorders, such as those defined by the CDC. Dr. Wolfe's modification of his 2010 criteria suggests in point three under the description of the criteria above in order to diagnose fibromyalgia, “the patient does not have a disorder that would otherwise sufficiently explain the pain.

3. “A careful clinical evaluation is always required in order to identify any condition that could fully account for the patient’s symptoms and/or contribute to the severity of the symptoms.” A clinical evaluation includes the parameters mentioned above in 1. The Bennett investigators conclude that a patient’s symptoms should be investigated seriously and not be dismissed as poly-symptom somatic complaints as suggested by the Wolfe team of investigators. This is important because many of the symptoms fibromyalgia patients experience can be attributed to other treatable conditions that affect patient outcome.

I had to respond to the likes of the Duke University doctor, because she is not alone thanks to the likes of Dr. Wolfe, who uses unapproved APA tools and handpicked databases for his research. I am not a scientist, nor a statistician, however I did conduct a study while in college, and I can tell you that doing an unbiased literature review is research 101. Choosing only literature that fits your hypothesis is flawed. Oddly enough, or not so oddly enough, I recently saw an article in a Physicians online journal “Healthcare Professionals Network” here that suggested Dr. Bennett endorsed the 2010 Wolfe Criteria carte blanche. In fact, the Bennett Alternative Criteria published in the September issue of Arthritis Care and Research, (Bennett, et al. 2014), includes a comparative analysis. Yet, this reporter made no mention that the 2013 Alternate Criteria outperformed the Wolfe, et al 2010 modified criteria in key areas. This partiality makes his report nothing short of propaganda.

Remember, if your physician is not helping you feel better physically, mentally, and emotionally, they have issues, not you! If they are not conducting a physical exam and considering common comorbid conditions to fibromyalgia, they are negligent. If you are harmed by their disregard for your complaints or inconsiderate statements, report them. (See the links on my website here.) Next time, record your visit. Plenty of chronically ill patients need to have counseling for dealing with their symptoms, but to need it because of a doctor that took an oath to do no harm is unacceptable.

I am appalled by the way ive been treated by doctors. " if you are more poitive and active youll feel better" "here try this script, the only side effects are seizures, death, or hallucinations." I ve been to 5 specialists and no one has helped me. Nobody cares if you have fibro. The doctors are aggrivated whenever you say the word. If some doctor would like to help please do. Ive already spend over 8,000$ trying to help my fibro. Something has got to change.